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  • 21-06-2011 5:28pm
    #1
    LegacyUser
    Registered Users, Registered Users 2 Posts: 166,026 ✭✭✭✭


    I have an illness some years which has been called me and cfs etc but i do not reaaly accept such labels and do not want to get in to the politics or infighting of patient groups. i have been very weak latetly and so i asked my doctor if it would be worth my while going for private tests in an efort to find an illness that is treatable. I would like to know if anyone has done that and what extra tests are available and are they real tests or just the medical profesion saying while he has the money we will test him

    I understand dr kerr who a few years ago was talking about a cure is gone of the me scene and the xmrv is debunked so where does that leave research.


Comments

  • #2
    LegacyUser
    Registered Users, Registered Users 2 Posts: 166,026 ✭✭✭✭LegacyUser


    Hi there,

    I can totally sympathise with what you're going through. I was labelled with post-viral syndrome/CFS/ME/arthritis for years and felt that once a doctor had diagnosed you, they felt you were off their hands. My symptoms were being treated with all manner of hormones and anti-inflammatories but the actual *cause* of my symptoms was not being looked at. I eventually found help with a doctor who was prepared to search for the cause and ran a huge amount of tests, mostly looking at immune function and whether there were any bacterial or viral infections there that could be making me ill. It turned out that I had lyme disease and have improved about 85% since having treatment for that.

    To my knowledge, there are 2 places worth going to for answers if you have the money to go private. 1 is Breakspear Hospital in Hertfordshire, UK. They take a broad approach and look at any possible causes for an illness such as yours and treat accordingly, and will work with your GP at home. The other is Graham Fry, who is running a CFS clinic in Grafton St, Dublin, looking for causes behind ME type symptoms.

    You have to keep looking for answers as you're not going to get better on your own and, in general, doctors here will simply treat symptoms without actually getting you better.

    Hope this helps,
    Best wishes to you,
    M.


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